Gwen’s life puzzle…some pieces are missing.
As a parent, at first we try to deny or hide to ourselves that everything was fine with our first born child Gwen. Even some of our friends tried to cheer us up by saying it is normal for some children are delay. Some says he was a late bloomer; it was too early to worry. But yet some where in the back of my mind we had some doubts. Gwen seems to be different than the other kids around. He had some unusual attributes. He repeatedly screams so loud, he refused to have a hair cut or even to see the glimpse of a barber shop. He doesn’t have eye contact. At his two years, he was still not talking. He had not said even one or two words. Every time I gave him a bedtime story he doesn’t even listen. I thought he was a deaf. He was continually not talking and his behavior became increasingly strange. He would run in circle, he didn’t seem to know what exactly to do with his toys. He is not even engaged in playing with other kids. On a several occasion, He was even hurt himself intentionally. Of all strange, unexplainable symptoms we were most alarmed by his increasing isolation. He was unresponsive, he is no longer seems to notice when another person was in the room. In some situation our neighbor saw Gwen walking alone in the middle of the road. He is not aware of the great danger that is ahead of him. He didn’t notice or mind when he banged his head. It seems he didn’t feel any pain at all. Those strange things and signs that can’t deny that something was wrong and I knew Gwen was facing a serious problem. Then my wife got a suggestion from her client at work who happens to be a pediatrician doctor. She said we should send our son to a developmental doctor for us to know his condition. We went to see a Developmental Pediatrician in Polymedic Hospital in Mandaluyong to check him up and we shared out our concern with the doctor. Gwen was about 2 ½ years old then. And that was the time I heard the word Asperger Spectrum Disorder or much well known as Autism. Base on the explanation of a doctor, Autism is a psychiatric disorder of childhood characterized by marked deficits in communication and social interaction, preoccupation with fantasy, language impairment, and abnormal behavior, such as repetitive acts and excessive attachment to certain objects. It is usually associated with intellectual impairment. And Gwen possesses all this symptoms. He was diagnosed with mild Autism. And according to the doctor, autistic might tend to be deaf. But in my son’s case, she assured to us that there is nothing wrong with Gwen’s hearing. After hearing that, it really made my heart sank on a deep sadness and depression. It was so hard, hard to deal with the news that my son may never be normal and there was no cure for his illness. It is a fate that I must accept. I lost my appetite for a week and unable to sleep. I could not think of nothing but only fear that our son might get lost to us forever. Then I woke up one beautiful morning and decided not just to sit down and let those fears eat my soul, I have to move before my son will totally take away by his illness. We keep on searching for other clues to help us deal with his condition. We were so obsessed finding out information that may help him. Internet helps a lot, and I found out the good news that there are now a wide variety of treatment options which can be very helpful. We were grateful to those parents creating sites which our family relates in their stories and hopes. I found also tons of information on how we should deal autism in some inexpensive way like by avoiding foods/snacks that may trigger his aggression. Some treatment may lead to great improvement and others have little or no effect. He had begun attending occupational therapy. The development was great. His tantrums lessen, his hitting and banging of his head suddenly is gone. It was so visible even our neighbors have noticed it. It was great for the first three months and therapy eventually had been stopped. Because we forgot that we are also suffering on another nightmare…which is poverty. We don’t have enough resources to provide Gwen’s need. I’m just a shoe salesman in the Philippines with minimum wages and my wife is a plain housewife. She had to give up her job as a Sales Lady after she knew her son’s condition. Because we both know Gwen needs full attention, care and guidance. No one could understand him as much as he understands by his own mother. Then I decided to leave Gwen and his mom for a while and found a job at Saudi Arabia. I thought I could give him a better assistance but it gets more complicated. For Gwen’s needs are getting higher and higher as we expected. According to his Occupational therapist who had seen him for months, Gwen needs Speech and ABA therapy along with the OT. And at the same time, he needs to go in a day care center or special pre-school in able for him to develop his social and cognitive skills. And my earnings were not enough to support all these Early Intervention therapies that are critical to the development of my son. Then we try to search other therapy center that offers a low cost fee. Again, Gwen was enrolled in a therapy center in Pasig City where he took a 2x a week/1 hour session of Advance Behavioral Analysis therapy. We pay Php 400.00 per hour of session. It only lasted for three months. His ABA and OT was on and off. Hardship, fear and anxiety are manifesting on our family. It comes to my mind to give up…give up my son’s life to grip by the hands of autism. The situation became worse and it’s getting harder as our child gets older. My mind and soul filled with bitterness and desperation. His behavior begun to regress, he had begun again to manifest bad behaviors like hitting himself, his mother and people around him. He was always on outburst anger. He banged his head on the floor. He slammed the door whenever he was frustrated. His behavior became unmanageable. I couldn’t bear to see my son being a prisoner of that strange and unexplainable illness.
Even he is no longer attending his therapy session. My wife was giving him intervention she had learned from the internet. But still, her knowledge is not enough to address our son’s needs. My wife familiarized him to things usually seen around by using visual pictures she had cut out from a magazine. She bought ABC books were used to teach him to read. And we were so amazed how Gwen has responded. He is a fast learner. His cognitive skills were extremely amazing. My wife starts to teach him how to write letters and eventually he had learned to write his own name. His hand motor skill begun to improved. And he starts to draw character from his favorite cartoons in Disney. And Gwen really likes computer. We were shocked when we knew Gwen can browse on the internet, and other hundred amazing thing he can. Then we decided to get him enroll in a special school. But after my wife have inquired in different school, our hopes begun to lose. Then one of my wife’s friend was introduced us in a public school in their city. Gwen was admitted in that school for school year 2009-2010. And because of that we transferred our residency from Mandaluyong City to Antipolo City where his school was located. We were so excited for the school to starts, when we found out that the set up has a huge different from a private school. Gwen goes to school only 2x a week. And in one classroom, 1 is to 5 scales. And every child gets only 20 minutes of intervention. Again, we start to worry. Because among the kids around only my son who has a mild autism. The teachers were also amazed with the things he is capable with. And according to them, Gwen can improve his skills and behaviors if he could be on a one on one set-up of intervention. Gwen participates well in class. In fact, he has more advantage than to all his classmates. He can read, write, draw and has a little comprehension in every command given to him by his teacher. But the problem was Gwen can not concentrate during his task because others kids were screaming, roaming and even crying. I was so depressed, thinking if only I could afford to send him in a private sped school. In able for him to get a proper intervention where his needs can be addressed. But with no choice, I have to face reality of what the real situation of public sped school we have.
My wife decided to go back to work again, a very hard decision we’ve made. She has to work in able to support Gwen’s therapy. Because of that we have to move back again to Mandaluyong for her new work located in the city. We pulled out Gwen in that school and transferred him to another sped school in Mandaluyong City. But we were surprised with set-up of his new school. They were seven special kids and only one teacher, and they are not a registered teacher. They are volunteer parents. And one thing really breaks my heart was they have no classroom. They were only had their classes on the stairs near the school gate. Which is for me is not comfortable, not advisable and very not safe for them. I and my wife agreed to pull him out in that school.
Now Gwen only stays at home with his Grandma. He is now 7 years old. And he misses going to school. He had also stopped from his Occupational Therapy. Every time I see Gwen. In my heart I knew we are blessed. I am not that poor after all because I have a bright and clever boy. Gwen is almost non verbal but his message was clearly seen. He is my inspiration and he makes me stronger. He gives me wider views on life, a wider goal to set and to face the challenges. The goal is not to make him normal. The goal is to unleash his special gift. Not simply taking damaged kid and make them whole but connect them with their special gifts, enable them to succeed in their special ways. Gwen is an amazing kid. The have a rare photographic memory, He has a pure heart, loving and a very warm child. All the gifts and potentials that he possesses that every parent wishes for. But we still facing hindrances on his recovery. He is no access to Speech, Occupational and Behavioral Therapy. Public Sped School had a limited service for children like him. And only private sped school can only give better education and living with kids like this. But it would be so expensive and we probably can not afford it. I’m not a doctor I’m just a father who love his child so much….a father who seek help for his son’s complete recovery. With your help and love, my son someday will be a freeman from being a prisoner of Autism.
We are appealing to you; we need help support for Gwen. We believed if Gwen could only get proper therapy intervention and proper education, he can be mainstreamed and can overcome Autism. And when he gets older he can be a great asset of this country. Many Autistic children had overcome autism, because their family is fortunate because they can get a proper intervention that they can provide. Some of them are working in a huge and reputable firm in this country. But what about us...what future lies to the children like Gwen. We also wanted better future for our precious son. He is our only child. And we can’t give him a brother or sister so he may have a companion as he grow, but we’re afraid so that we might loose the little support we can give to him, what more if we have other siblings. Gwen needs your help. Your generous heart can make our dream come to reality
Poverty + Autism are a perfect possession of a child to a miserable life. Gwen needs a miracle. It is more miracle of the heart than a miracle of science, a healing miracle of love and faith.
We see a perfect picture on Gwen’s road of recovery but some pieces are still missing.
PLEASE HELP US TO COMPLETE GWEN’s LIFE PUZZLE by giving assistance on his Therapy and Special Education. Whatever help you may offer will make a big contribution in developing and molding him as a human being.


Yours truly,
Mr. Celso Delos Santos Rase
Father of Autistic Child.
Celso_rase@yahoo.com

No, I'm not a mother with an autistic child, I am a father with two autistic children. You didn't ask for my story but I am submitting two links anyway.

http://seanmacnair.blogspot.com/2006/01/fathers-story.html
http://seanmacnair.blogspot.com/2009/09/blog-post.html

These stories represent two sides of the same coin, and are as honest as I can possibly get.

Sean MacNair

Last week my sons started asking lots of questions about the 4th of July. No, not the questions about how we would celebrate or if we would go visit family or if we would have a cook out. No, their questions were about fireworks, specifically, would they have to hear any?  If you have a child with autism, you may experience the extreme anguish your children feel when they hear the loud popping noises of fireworks. I don't particularly care for loud noises either, but my kids absolutely obsess about this noise. They start worrying about a few weeks ahead of time.  Do we live in the city limits?  Can people shoot off fireworks in our neighborhood, and so on.

One morning last week, Nick said, "I wish we could just skip the month of July." I said, "oh, you want to go straight from June to August since that is your birthday month!"  "NO," he shouted at me. "I don't want to have the 4th of July."  By Thursday, the boys had made sure they knew where their earphones were and had them at the ready. We've used noise reduction earphones for a long time for loud music, loud movies, etc. We were supposed to go to Missouri for the 4th of July weekend and visit my brothers and my mother.  However, on Wednesday and Thursday when we discussed this in our family and the boys realized that there would be no avoiding fireworks, they refused to go. My brother lives in a rural area and there were definitely going to be fireworks there. I've learned to at least avoid exposing people I love to the meltdowns that something as simple as fireworks can spawn.

On Thursday evening, a neighbor set off a few fireworks a block or so away.  Nick and Will became frantic. Nick had on his earphones and was carrying the telephone around. He wanted to call 911.  I told him that fireworks were not an emergency and that he could not call 911.  He dialed the neighbor's phone number repeatedly. They did not answer (thankfully).  He left wild messages for them to stop shooting off fireworks.

Friday night was a repeat of Thursday night and it wasn't even the 4th of July yet. On Saturday, I got out ear plugs to go under the earphones. The boys had them in by 6:00, just to be ready. At the first sound of fireworks nearby, they jumped in bed and threw the covers over their heads.  They slept all night long with the ear plugs and earphones securely in their ears. Just for good measure, a gigantic storm, complete with thunder and lightning followed the fireworks.

This morning, there were smiles all around.  "No more fireworks, right Mom?" they asked in unison.  I smiled, hugged them tight and thanked God that another 4th of July had passed.  

 

I am the mother of an autistic son. He is 23 yrs old. Your story Welcome To My World really hit home in my heart, I too have days of crying and asking God why me and why Kevin? As Kevin grows so does my faith in God grow for I have a son who does not speak much but a word or two at a time, not potty trained yet, that has been fun, doesn't dress or undress or say when he is in pain. I have to find it.

Some examples in my life are not knowing Kevin had a cyst that was draining and in process of healing, since it was really close to rectum I did'nt see it until one day he bent over to pick up a toy off the bathroom floor and I saw what looked like a second rectum, I start crying calling emergency took him in to find polyanidal cyst which is fine clean and healing oh my gosh how could my own child have an owie and me not know it? Feelings of guilt set in. Why didn't I look before now. I never thought to bend him over and look. These wake up calls are pay more attention to child and world pay more atttention to God. He is there for Kevin regularly. 

Kevin had to have 2 spinal surgeries at age 16 for scoleosis. Kevin walked all the way down the hall the very next morning with a smile on his face. He needed only a little pain meds for God was holding him and his pain. Kevin has the ability to make your heart melt with his smile and he has the most beautiful blue eyes you have ever seen. My story may seem like rambling. I am constantly in hurricane mode with my thoughts. Even now I wonder what he is doing. While I'm typing, thoughts of him are with me every minute of the day and night. However, I feel blessed to be able to be reminded daily of how unimportant our own desires really are. I have a son that talks to Jesus and God without being able to talk to us humans. Kevin tells me granny and grandpa are with Jesus also and dancing and saying wheeeeeeeee,

I loved the short part of your story and will love to read the book. Please hurry. Thank you for reminding me I share thoughts and feelings with other women who also want to be the very best they can be with what God has chosen for them. Thank you.

I am Jessica and I have 2 boys. Caleb and Nathan. Nathan is 3 years old and he does not have Autism. Nathan is a handful and a half but a smart,fun and loving little boy. Nathan has been evaluated and mostly just lacks social emotional skills. So for now we just have to keep a eye on him. Caleb is almost 5 years old and he has Autism. Caleb developed perfectly until he reached 15 months old. He went in for his routine 15 month check up, got his vaccines and a few days later had Salmonella (?). He was also hospitalized for breathing trouble.

During the next couple months I watched my son slip away from the little boy he once was. He was a talker and he loved playing with his cousin who is 2 months younger then him, When is was 18 months all he did was scream, head bang off everything he could, bite, hit, kick etc. He lost all his communication skills. At his 18 month check up I was told to wait it out because since there was a new baby around he was having issues. We lived with my brother and his wife and they just had a new little baby boy. I knew better but I did not want to think anything was wrong with him. I kept taking him back in and I was always told give it time. By his 2 year check up he was so far behind it was crazy.

We did start using a Birth to Three 5 months prior to him turning 2.By the time Birth to 3 came in his speaking ability was at the age of a 9 month old baby and he was 19 months old.
Finally I was given some information on where to go and I started the process. I could not believe it took almost another 4 months to get him in to see the team of doctors and the fee they wanted that state insurance did not cover. After 3 days of driving 170 miles round trip each day we got the Autism diagnoses with regression. It was so hard to grasp. I had never heard of it before and from what I read I was scared to death. The developmental pediatrician was a nasty rude careless woman. She blamed me for his behavior and said I was unwilling to try to help my son. I did everything I could. I drove so many times to get him help but these people always were playing the blame game. Well if you would only do this he would do better or your not trying hard enough, that is what I would hear. So I found a new Doctor who is a Neurologist and she has been wonderful. She has told me Caleb is High Functioning Autistic with ADHD and Bi Polar disorder. With meds he has done pretty well. Alot of his meltdowns are from lack of communication.

Caleb started school right after he turned 3 and this year he goes to kindergarten. He still is very delayed in his speech and other areas. He will have a teacher who has her own child with Autism which makes me feel better. He is doing a in home therapy program and he has come along way. It is hard to see him and then see his 3 year old brother just whizzing past him in everything. I cry because I can not make it better. I cry because there are some many things I want to try but we have no money to do so. All these stories about DAN doctors and GFCF diets make me have hope but we can not afford that treatment. We barely make it now. So for now we just have to keep doing the Speech, OT and in home program or he loses skills.

Even though Caleb has Autism he has always remained very loving and affectionate towards others. He shows empathy some of the time and he is the first to give a hug and a kiss. I would tell other parents just love your children the way they are because they are perfect. My son might not talk like others, play like others or act like others but he is perfect because he is mine and he is wonderful.